Stevens-Johnson Syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe, life-threatening reactions, most often triggered by medications, that lead to widespread inflammation, skin detachment, and sloughing of mucous membranes. These mucosal surfaces include the eyes, mouth, respiratory tract, gastrointestinal tract, and urogenital system. Together, the SJS/TEN spectrum carries a mortality rate of up to 50% and is frequently associated with long-term physical and psychological complications, including irreversible disabilities.
Due to their high fatality rate and the potential for lasting disability, SJS and TEN represent a significant public health burden. In the United States alone, the cost of acute hospitalization for these conditions is estimated to exceed $125 million annually—approximately five times greater than the cost of hospitalizations for other causes.
Scientific advances in pharmacogenetics have led to the identification of certain genetic risk factors that predispose individuals to SJS/TEN. For example, the HLA-B15:02 allele is strongly associated with carbamazepine-induced SJS/TEN, while HLA-B58:01 is linked to reactions from allopurinol.
Despite the severe consequences of disease, SJS/TEN is rare, making research that requires access to patients difficult. As a result, uncovering additional genetic risk factors tied to mortality and long-term complications – such as blindness, infertility, scarring, and respiratory difficulties – is challenging.
The SJS Research Consortium is actively building a registry of SJS/TEN patients to better understand these risk factors and to identify predictors of ocular, respiratory, urogenital, gynecologic, and mental health disease.
At the SJS Research Consortium, our mission is to drive progress through collaboration and innovation, advancing research and improving health outcomes for all those affected by SJS/TEN.
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